The report has highlighted the issue of digital exclusion amongst unpaid carers and how it can exacerbate many of these problems: “Socially excluded people such as those of low economic status, of older age and with a disability are more likely to be digitally excluded. Many carers fall into these categories and therefore many carers are missing out on the benefits the internet can bring.” The use of the internet to find support and information, contact others, save time on tasks like online shopping or engaging with public services, is simply not an option for many carers.

Why talk about health and wellbeing?

Research indicates that it costs at least three times as much to raise a disabled child as a child without a disability. However, a child with a disability or severe illness in the family often means having to reduce working hours or give up work entirely, because of the difficulty in finding flexible working arrangements that fit in with endless hospital appointments and periods of ill health. This is compounded by the difficulty of finding affordable and trusted childcare that can meet all the complex needs of many of the children we support. In the words of one mother “I have only been able to do school hours and work in term time so that I’m around for my son, so financially we have really struggled.”

The situation for families is reflected in the report, which states that “46% of carers are not in work and not looking for work, and of those who are working, or looking for work, 89% say caring limits their capacity for paid employment. 40% of carers say they rarely or never feel optimistic about the future, and parent carers worry especially about the future care of their children.”

Caring is a 24/7 role for many parents and people can sometimes underestimate the different ways in needing to be ever-present for their child can take its toll on health and wellbeing – something parents and carers rarely think about or address.

Hidden Carers

Often, parents of disabled children struggle to get acknowledged as carers – or sometimes struggle to acknowledge they are carers themselves. Parents tell us that they often feel stigmatised as unemployed, as though their contribution and work is not valued. Not surprisingly the report found this lack of recognition to be a common issue, with carers often feeling unable to focus on their own health and wellbeing.

We ran a workshop for carers in Croydon as part of the evidence for the report. One of the parents told us: ““It has affected my health, I have got fibromyalgia. I lack spontaneity, I can’t make any plans, I am always late, people don’t understand, I am managing different households, what is my future like? What will happen to me because I spend so much time looking after someone else?”

Digital Inclusion

A key grant request for families applying to Family Fund is for a tablet or computer, which can help with their child’s development and education, as well as provide a gateway to help get online. But we know so many parents and carers still don’t have digital access, or struggle to support their disabled children to access online communities safely.

This report gives us firm evidence for this, showing that families want greater confidence in finding online support networks and also to locate information that will support their caring role. Caring can be isolating and lonely, with 70% of carers caring more than 50 hours a week, but there is huge capacity to provide help online which can be accessed as and when parents and carers need it.

We know that families still struggle to access local help, and the report acknowledges that organisations need to work together to ensure families find the help in whatever form, when they need it most. Most importantly, parents need to keep healthy and well to ensure the wellbeing of their whole family.

Over the next year, we will be working with the Tinder Foundation to try to address some of the issues raised in this report and will aim to be at the forefront of providing more information and signposting for support to families and reducing digital exclusion. We hope by next year we can report on some progress towards ensuring the hidden challenges carers face are starting to be addressed.

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